• Re-cooperating from side effects, physically and psychologically

    Asked by nancyjac on Thursday, July 5, 2012

    Re-cooperating from side effects, physically and psychologically

    So I've been through the major components of my treatment....chemo, surgery, radiation. Still getting herceptin infusions and will be starting on Armidex. Many of the side effects from chemo, surgery, and radiation were pretty temporary and have gone away, but others have not.

    The ones that have not are really frustrating me and to some extent family, friends, and co-workers. I still get tired very quickly and don't have much strength, particularly upper body strength. I also still have some peripheral neuropathy that still affects my balance and ability to carry things (like my coffee cup, dishes, etc.). And ever since surgery, I have a painful knee making it hard to walk, run, cycle, etc. in terms of exercise. And once I start taking Armidex, joint and bone issues could get worse instead of better.

    I don't want to give up trying to resolve these lingering side effects or find better functional workarounds for them, but I want to be realistic too.
    (Continued next post)

    7 Answers from the Community

    7 answers
    • nancyjac's Avatar

      grrrrr.....ran out of characters.....

      Maybe where I am with these side effects is as good as it is going to get? How do I make family, friends, co-workers understand that I may never have the same physical capabilities that I had before. They seem to think (as did I) that at this point I should be "as good as new".

      What are your thoughts and experiences on this?

      about 8 years ago
    • CarolLHRN's Avatar

      I understand where you are coming from. All through my year of treatment I kept saying, "I just want my life back." What I didn't understand is that it wasn't possible to get my old life back. I had changed so much physically and emotionally that my old life didn't suit me any longer.

      I am frustrated with the side effects of chemo. I still have some neuropathy in my fingers and feet (I totally understand the balance thing). I am still tired. I thought my napping days would be over but they aren't. In fact, all through treatment I said I was going to get a new couch when everything was over because it reminded me of being sick and all the napping I did but I'm still napping on that couch.

      I have been spending a lot of time (and I haven't finished yet) figuring out what it is that will bring joy to my life. I used to really enjoy yoga but with my balance issues, it's not enjoyable anymore and it actually makes me more frustrated than anything. I decided to give up yoga for now and focus on swimming because I really enjoy the water and you don't need balance. I used to cross stitch as well but I struggle with that now. Instead, I have taken up reading.

      I am redefining who I am and what I like to do and instead of getting my life back or being good as new, I am working on being even better than before. It does take time and patience. I think as I am becoming more comfortable and confident with my new life and enjoying things again (even though they are different), my family and friends have become even more supportive and understanding. i don't think initially my family and friends understood but when they saw me box up my sewing supplies and donate them to charity I think they finally got it.

      Give yourself some time and don't be harsh on yourself. Take some time to figure out what makes you happy and go for it. If you try something and you don't like it, there is always time to try something else until you figure out what you like.

      about 8 years ago
    • GregP_WN's Avatar

      I had the same thing happen during my last, 3rd, diagnoses and treatments. After all the radiation and surgery was done, I slowly started to recover. I would go out on a job with my crew to watch them work, since I wasn't supposed to be doing anything. I would get bored and start trying to help the crew, I felt Like I could do something. But after just a small amount of work, I was spent. It made me mad that my mind was telling be I could do something, but my body said now way. Even today, 3.5 years later, I still can't do what I used to be able to do, but I can say that it seems to get better all the time, it's just real ssssslllllooooooowwwwww.
      good luck to you, and as REO speedwagon would say, "Keep Pushing on"!

      about 8 years ago
    • Ken52's Avatar

      Howdy Nancyjac
      Top of the morning to you. Hoping all getting better each and every day for you.
      I understand what you are saying.
      I am not complaining when you read the below - just the way it is. I am so happy to be able to try and enjoy each and every day. Anyway little of my journey.

      Chemo did its job, but has taken its toll on other parts.

      I am in remission from AML (leukemia) one year - I had five more 3 day chemo treatments with the last in Oct 2011. Lovenox shots until Jan 2012 for blood clots.
      I also get tired quickly, I did 3 months PT to regain some strength, then started at the YMCA to continue exercising, but I started having pain in my feet, ankles, wrist, hands, very bad at my knee/s. This ended any exercise for couple months. I was given neurontin for the neuropathy which helped some - I did not realize the pharmacy gave me 100mg instead of the 300 as prescribe for couple months. The higher dose is better. I was given Mobic as an inflammatory, has help some with knee/s, but not other joints. I still have pain in my hands - wrist. I have a hard time trying to hold a tooth brush, along with balance issues. My memory is fuzzy - and I take so much more time trying to perform a task, forgetfulness, my wording- grammar is so fragmented now. I have cut and pasted several times here trying to put items in a better chronological order.
      I say all this as there are those that believe I am good as new since I am in remission. I do not believe it is worth time and effort to try to get some to understand. They look at me, Oh you really look good. Looking one way - feeling another - two different things some can not understand. Before I was sick, I took couple vitamins, basically no medicines, now I seem to be a walking pharmacy... I believe some current symptom are the medications. ugh. Oh well - this beats what my alternative was. I am told each person journey is unique when it comes to dealing with what we are going through. Each will be different. Still, I read so many that are similar in ways.
      I wish there was an answer, maybe some others with more time behind them have a better insight.

      Enjoy the Moment! Ken

      about 8 years ago
    • Cindy's Avatar

      I still have lingering effects from neuropathy in my feet and its been about a year and three months since I had my last chemo treatment. However, it has improved since that last treatment. I had the problem with balance issues I believe caused by the neuropathy for 9 months after my last chemo treatment. After the balance issues resolved themselves, I was able to start exercising and now have slowly gained enough strength to exercise (walk/swim/weight lifting) 30-45 minutes each day. Getting a dog who likes to go on walks was a big motivator for me to get out and walk her each day. I was fortunate to have friends who were understanding when I told them when I was not up to doing things that involved a lot of walking during that first year after chemo. I had a desk job, so I did not need to too much physical exertion at work. I let people know when things were too strenuous for me and suggested alternate activities that I could do.

      about 8 years ago
    • leepenn's Avatar

      hey nj - i'm so sorry that it's been so rough for you. i also feel continuing side effects from chemo, and it does bum me out. i am doing well in the sense that i'm out on the bike - getting great rides in - finding my power again... but i'm also post-menopausal now (over ten years early) and so on.... i feel my strength and stamina are coming back, but i keep wondering how much i'll get back. can i get close to where i was last year? i really love riding hard with my racer buddies, and i'd love to do that stuff again.

      i go through phases of deep sadness for my body's condition pre-chemo and gratefulness that it's not worse and then right back to sadness...

      the only thing i know is that movement is good - so find what you can do and do it... how about swimming? my health care providers all say that movement makes things heal faster and lessens side effects.

      in terms of telling family, this one is so hard, right? i mean, at least while we were actually doing chemo, we looked truly different. now, people are all telling me that i look great, and so when i say hey, i'm tired... they are like - wha? like, aren't you over that stuff yet?

      i have no answers. but i do have the very good fortune of having a small number of friends that truly are able to listen... and not judge me.... and a wonderful better half who actually tends to assume that i'm not as strong as i am... which can be equally frustrating.

      oh my - i'm just all over the place with my response.

      well... i hope you have a peaceful day.

      about 8 years ago
    • nancyjac's Avatar

      Hi Lee,

      My current problems with "movement" are probably what are frustrating me the most. I want so much to run, walk, bike, etc. and sometimes I get so angry that my body is just not cooperating the way I want it to. Some times it seems like a no win situation. If I don't do enough, I feel like I am failing, but if I do too much, I hurt so bad afterwards that I feel like I am failing. I'm still experimenting with trying to find that point to which I can push myself without overdoing it so that I regret it a few hours or a day later. I wish I liked swimming more, but I just don't. Chlorine does terrible things to my skin and my sinuses and doing laps in a pool just bores me to tears. With walking and biking and running at least there is something to see, feel, smell, hear, etc. Swimming eliminates all of those senses (well not the icky smell of the chlorine). I know....I'm just whining now...LOL.

      about 8 years ago

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